Again, thanks to everyone for the support and tips.
Well, yes, but this week I can actually get him to use the cane. A walker might be suggested in a bit more time I think.
Although he was more than willing to use one of the supplied wheelchairs to get from the parking lot to the doc’s office at the medical center.
Yes, but we’re both reluctant to have strangers in the house. That is something we might look into in a bit. I’m just worried about how much that will stress him out.
Right now I’m using a drop off laundry service, I think I might have mentioned that. Having someone help out with things like light cleaning, maybe the dishes, and that sort of thing does sound appealing…
Nope, never a smoker. He has been prone to urinary tract problems since birth, though, which did increase his risk of something of this sort,
I’ve been taking notes.
I inherited my dad’s tablet, which has both solitaire and crosswords on it, and I should probably load an e-book app on it, too.
I agree with those who’ve recommended a walker with a seat. Mine also has lockable wheels, making it easier to push.
And isn’t it amazing how many facilities don’t have wheelchairs available, or even a place to sit and rest during the long walk from parking? I’ve been complaining about this, often with results.
I was resistant to a wheelchair at first, but I was in so much pain while walking that sitting in the chair was a relief, and I could get wheeled around to see things. It wasn’t a bad way to travel! My senior mom has back issues, and it was actually easier for her to lean on the chair and push me than for her to walk all those hospital hallways unaided. I’m sure we were quite a sight. We covered a lot of ground. Fast walker Mr. Helena tended to go too fast and I could swear the thing was on one wheel going around some of those corners.
Broomstick, I hope your husband acquiesces to the walker soon. It really was easier when I stopped resisting and started using the tools meant to help me. I do know what a mental hurdle it is to get there, though. It means giving up normalcy and giving in to the illness. He’s not just being stubborn. My heart goes out to both of you, but particularly to him on this part of it.
Pai325, I hope you’re doing well. Gentle hugs. I know what you mean about being clean. I was in the hospital for 11 days and only got one semi-shower at the end of it that didn’t include my hair. They did use some kind of warm pack on it which felt good but left it gunkier than before. I sat on my new shower chair for a half-hour when I got home and was allowed a shower. We take showering and being clean for granted.
Having a health aide also give a family member some time for their self , I was a health aide and really enjoyed helping people . I am glad you’re able to have one help you out twice a week .
I hope the OP husband will be able to get all the help he needs while home .
My husband is in the process of having his teeth removed and getting dentures, so eating is an issue for him as well. I have been making him chocolate peanut butter protein shakes - plain yogurt, chocolate flavored protein powder, peanut butter, Hershey’s syrup, milk and ice. Sometimes I use frozen bananas in place of the ice. At least I know he’s getting some protein, since he won’t eat eggs.
Yes, you are so right about that. My husband is 79, and my illness has been a real hardship on him although he would never say that. He can run out and get a haircut or just read the paper while the aide is here. He might have to put the laundry away, but it’s clean and folded for him. I’m relaxed because I have her, and he is very relaxed because there is another adult in the house and he has some time to himself. I’m happy we can afford it.
First of all, the pain management. Kratom is out there in every convenience store! BUY some and use it.
There are some healthful herbs which kick the ass of Cancer but good. Get on the internet and find them.
Mind/body therapy.
You believe that you will make thru the ordeal …you will! YOU must help him to see that people can survive and beat Cancer, of any kind! My prayers go out to both of you!
I had one kind in 1972, another in 1979, and now this, and the last two were both a result of the treatment I had for the first. I knew it was just a matter of time. It’s just that when the time comes, you’re still surprised.
This one they can’t fix, so no try for a cure. We are just managing, but I hope for so much more for your husband.
They are great for helping to manage things like pain control (maybe there are other long-term pain control options that would leave him feeling less fuzzy headed), constipation, nausea, weight loss/lack of appetite, etc.
I don’t know what the culture is like at your husband’s oncologist’s office, if you have been put in touch with a palliative team yet or what, but if not, they could be worth seeking out early in the game. A lot of times people think that calling palliative care means you are throwing in the towel, but they are SO much more than that, and can really help improve someone’s quality of life while going through any sort of noxious treatment.
My sister with the MD is a palliative care specialist - still don’t know the oncologist that well, but I do know my sister. We (the three of us) had a fairly long conversation today that, in addition to discussing things like power of attorney and possible treatment options we also covered palliative care, what to consider, and what to take to the cancer specialist, how to talk to other doctors, and so forth. Not the happiest conversation, but one we needed to have.
A more local palliative care person is something to look at, but the discussion has actually already started at the Broomstick household.
I’ve had to become a medical expert a couple of times, and it bites especially if things don’t go well.
A couple of things.
First, you really do need to take good care of yourself. Getting that person to do the light housework is really important. Taking breaks yourself. Dropping what you expect you “should” be doing. For example, don’t feel like you need to be cooking everything. Don’t feel guilty about taking time for yourself. (Easier said than done, unfortunately.)
When dealing with doctors. Find out the types of questions you need to be asking, write them up and ask until you are satisfied with the answers. It sounds like you are getting some good help.
I had to overcome a lot of resistance to actually ask the doctors things such as the actual percentage chances.
Various regimens will have different chances of working. Ask! Does this work in about what percent of the people? What kind of results can we expect? A lot of it can’t be given in exact percentages, of course, but they can give rough numbers.
Well, it helps that my husband is insisting I take some time for myself - we’ve both been caretakers and we both understand how important that is. Fortunately, he doesn’t need someone hovering over him constantly so me getting away for a bit isn’t a huge issue at this point.
As I said, I’ve made use of the laundry drop-off service at my laundromat. Since we don’t have a washer or dryer at home that chore can eat up some significant time. I’ve also made use of some coupons for places like subway and last night I bought food to eat at work instead of making up a lunch (since half of the place I work is a grocery store doing that isn’t hideously expensive).
Has a long conversation with my sister the doctor yesterday, as I said. She’s seen both good and bad with cancer treatment and I think she’ll help us navigate all this.
My sister said that with chemo need to ask two questions:
What is this going to do for me? (Chances of success, that sort of thing. Can this cure me, or is it to prolong my life?)
What is this going to do to me? (Side effects - some of which may be permanent. If this is to prolong my life what sort of life will that be?)
That is really great that you have your sister. It sounds like you are doing well.
When my father had cancer we went though this with the doctor. Option A has a better chance of helping but is more likely to cause Y side effects. Option B has less side effects but may have less chance of success.
For example, when the chances of success aren’t really different but there are huge differences in the side effects then that needs to be taken into consideration.
Called our nurse advocate. We going to try an anti-spasmodic because the husband has been having terrible muscle spasms, so that’s being filled by our usual pharmacy (Hope we don’t have issues with that, and I need to follow up on some reimbursement issues anyway) We’re still waiting for insurance OK on the PET scan, but as soon as we get that we should be able to move quickly to get it done.
Contacted the medical transportation agency and now know how that works.
Downloaded the state-relevant information and documents for things like medical representative and power of attorney, so we’ll be getting that done.
Still have to call about the FMLA form, where to send the HIPAA form to the health insurance company, double-check on the referral from the PCP to the urologist, coordinate transportation for the urologist office tomorrow, talk to my boss about arranging things so I can go with hubby to the oncologist on Thursday, and if not, arrange transportation…
…this is my day off?
The nurse advocate also clued me in to some caregiver support, too. I’ll probably need it.
Right now I’m drinking out of a mug that used to be my best friend’s. He died of aggressive bladder CA 20 yrs ago - the yr after my mom died of aggressive breast CA.
When I was with my buddy the day before he died, the one thing that pissed him off the most was that he had cancelled scheduled trips to Egypt and Nepal, to participate in the treatment which proved futile.
I’m assuming such trips were not on your calendars, and I’m not suggesting that he eschew treatment. But just be aware of the extent to which you allow doctors to dictate whatever time he has left.
How is he doing with his pain meds today, broomstick?
The world of cancer gets so small. I remember when our cable went out when I was nearly bedridden, and I nearly had a panic attack. TV was my lifeline: my distraction and my link to the outside world. I was too sick to even get on the laptop. Those two hours were excruciating.
One thing that really helped me was when I’d make a “date” with Mr. Helena to watch a special movie or TV show together. He’d even buy specific DVD’s for this time (we own all the Star Trek movies now!). It gave me something to look forward to as in the life of a cancer patient there isn’t much of that. I’d make sure my pain meds were at the right level and that I’d eaten enough to be comfortable. We spent so much time thinking about and dealing with my cancer that we forgot to just enjoy each other’s company. I did the same with my mom. It really helped all of us.